Thursday, July 16, 2009

4 Weeks!!!!!!!!

We have officially made it 4 weeks without a hospital visit!!! YAY!!!! I am sooo excited about this because it was beginning to look like we were going to be visiting the ER way too often. Hopefully we can go much, much longer than this without an anaphylaxis episode.

That said, Isaiah is doing good. He has spots on his face and on his arms (little tiny red spots), but he looks pretty good overall. His speech is slowly recovering from the last episode and I think things are getting back to "normal." Another neat thing is we finally got to go on vacation. So far so good, but it looks like we may have to take a break for a day - he's getting really stressed . . . or overstimulated. Either way, he needs a day to catch up. =0) The trip is going well so far, very few reactions (reactions meaning rashes, sniffles, flushing . . . well, we have new rashes and he's flushing, but all is still well).

Speaking of "normal," =0) we had a very normal event happen this last week. Endeavour finally launched on its 6th attempt! =0) Yes, Florida weather this time of year can be a pain in the tush . . . it usually rains at some point every day this time of year. So, back to Endeavour, it finally launched even though the sky was a tad overcast. It was still incredible to see and I will post it for you guys to see - it was soooo loud. The clouds helped the sound last for quite a bit longer than it usually does and even helped to amplify it a bit - it was loud. =0) It's funny to hear people's car alarms going off for a launch (that's usually the thing you'd expect to happen when the shuttle comes back, you know, the whole sonic boom thing). It's so weird to be in the house when a shuttle comes back . . . it sounds like something has fallen on the roof of the house! It rattles windows, you can feel the vibration in a concrete floor . . . you get the picture - it's loud! =0) I'll post the video a tad later. =0)

"Da pace shu-tul went wayyyy up dere!" (The space shuttle went way up there . . . just in case you didn't catch that) =0)

Anyway, Isaiah was really excited to see the space shuttle go up, but disappointed that the astronauts didn't take him with them. Poor guy . . . maybe someday he'll get to see Jupiter or Mars. =0) With each failed attempt at launching, Isaiah was getting angry and discouraged. The last two times, Isaiah said that he was a superhero and would "break the storm" and help the astronauts get into "outer pace". I was so hoping that the shuttle would go up last week - it was difficult to explain to him that the shuttle had to be turned off because of a storm. =0) The look on his face was so sad. I wish we could get him over to the cape to see the shuttle - at least to one of the VIP spots. He is such a huge fan of the space shuttle . . . =0) He has been talking about going into space and seeing all the planets and stars . . . who knows, maybe we have an astronaut on our hands? =0) Maybe if we don't get our vacation, we can go to Kennedy Space Center once it cools down here . . . hopefully sometime soon . . . yeah, I know, wishful thinking, Florida isn't exactly known for it's cool weather. =0)

Sorry I haven't posted in a while - things have been so hectic, and Isaiah hates it when I am on the phone or the computer - he hates it. =0) I think he even knows when I am on it when he's sleeping . . . he always seems to wake up at some point. He's always been that way. =0) I have also been preparing for our trip - something I was still hesitant to say that we were actually going on this trip. I really didn't want to get my hopes up, nor Isaiah's - especially since we had to cancel it last time. I am hopeful and expectant that this trip will be negative-event free. =0) Planning around anaphylaxis that can happen for no apparent reason can be so stinkin' tricky . . . speaking of stinkin', did you know that there was a Flippen, Georgia? I laughed so hard I nearly had to pull over! =0) Anyway, trying to plan a vacation close to hospitals is so difficult! So is trying to find hotels that do not allow pets - something I had never thought about until I had a child with severe life-threatening allergies . . . I also never knew someone could anaphylax from being around or near a cat or dog.

Apart from all of the excitement from this past week, there's not much else to post . . . things are "quiet" for the most part - I am soooo thankful for that. I'll try to post pics every once in a while of our trip. I know that I have been horrible at posting, I have just been enjoying time with Isaiah . . . and going to bed at a reasonable time. =0)

1 comment:

Woohoo, that is so awesome. Here is to many, many more weeks without hospital visits or anaphylactic episodes :0). We are past 6 weeks of no diarrhea and are over the moon. The heat is giving Owen a hard time though but his reactions are way less severe than Isaiahs. But Benadryl is our best friend on those days or the day after he was out in the heat.

Isaiah 58:8-9

Then your light will break forth like the dawn,and your healing will quickly appear;then your righteousness will go before you,and the glory of the LORD will be your rear guard.Then you will call, and the LORD will answer;you will cry for help, and he will say, "Here am I".

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Isaiah-isms =0)

This is our new addition to the page - Isaiah-isms. He can say some pretty funny things . . . it's a tad scary, all those thoughts that have been locked up for so long . . . . =0) Here are a few of the things Isaiah has been saying lately . . .

"You can't be sad when you poop, Mom!"

"I got a chicken-cups, eeep!" (hiccups)

"I not go to bed ta-day!"

"To if-fibiddy an beyon!" (thanks, Buzz Lightyear!)

"I can't wanna do it."

"Take it-ta da top and cha-cha-cha!" =0) (I have no idea where that came from, but he's too cute when he says it!) =0)

"La hoo-hah-rah-cha, la hoo-hah-rah-cha. An he needs a get a kit-tar!" (kit-tar = guitar) =0)

"Dri-ben tuh Tord's tar-by!" (I'm in the Lord's army . . .)

"Aaaaaaagh! You're a muggering me!" =0)

"Lord Jesus to play!" ("Lord, teach us to pray.") =0)

"I hab wubed you with an eber-asting wub." ("I have loved you with an everlasting love.") =0)

Isaiah

In addition to severe food and environmental allergies, Isaiah has also been diagnosed with systemic mastocytosis. The combination of the two is unusual and seem to irritate each other - the allergic reactions are are worse because of the masto, and the masto reactions are worse because of the allergies.

A little about Mastocytosis . . .

Mastocytosis is a group of rare disorders of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors in a person's body. It can affect just the skin or it can also affect internal organs such as the stomach, lungs, and intestines. Instead of being an autoimmune disease, mastocytosis is considered to be a myeloproliferative disease in that the bone marrow is producing too many of a certain type of cell - in this case, mast cells. Some of the possible symptoms of mastocytosis look a lot like food or environmental allergies. A person with mastocytosis may be convinced that they have food allergies but the antibody tests may be negative.

According to FAAN, "an anaphylactic reaction may begin with a tingling sensation, itching, or a metallic taste in the mouth. Other symptoms can include hives, a sensation of warmth, wheezing or other difficulty breathing, coughing, swelling of the mouth and throat area, vomiting, diarrhea, cramping, a drop in blood pressure, and loss of consciousness. These symptoms may begin within several minutes to two hours after exposure to the allergen, but life-threatening reactions may get worse over a period of several hours.

In some reactions, the symptoms go away, only to return two to three hours later. This is called a “biphasic reaction.” Often these second-phase symptoms occur in the respiratory tract and may be more severe than the first-phase symptoms. Studies suggest that biphasic reactions occur in about 20 percent of anaphylactic reactions."

Watch my Autism Speaks video message

My Dad (aka Grandpa . . . okay, so he's Ye-Ye)

A little about Waldenstrom's Macroglobulinemia

Waldenstrom's macroglobulinemia is a rare, chronic cancer that is classified as a plasma cell neoplasm. It affects plasma cells, which develop from white blood cells called B-lymphocytes, or B cells.

B cells form in the lymph nodes and the bone marrow, the soft, spongy tissue inside bones. They are an important part of the body's immune (defense) system. Some B cells become plasma cells, which make, store, and release antibodies. Antibodies help the body fight viruses, bacteria, and other foreign substances.

In Waldenstrom's macroglobulinemia, abnormal plasma cells multiply out of control. They invade the bone marrow, lymph nodes, and spleen and produce excessive amounts of an antibody called IgM. Excess IgM in the blood causes hyperviscosity (thickening) of the blood.

Waldenstrom's macroglobulinemia usually occurs in people over age 65, but can occur in younger people. A review of cancer registries in the United States found that the disease is more common among men than women and among whites than blacks.

Some patients do not experience symptoms. Others may have enlarged lymph nodes or spleen, and may experience fatigue, headaches, weight loss, a tendency to bleed easily, visual problems, confusion, dizziness, Alzheimer's-like symptoms, and loss of co-ordination. These symptoms are often due to the thickening of the blood. In extreme cases, the increased concentration of IgM in the blood can lead to heart failure (taken from http://www.iwmf.com/WhatIsWM.htm).